Please visit the Sturge Weber Syndrome Awareness Day, Facebook page.

 

         Sturge Weber Syndrome Awareness Day

                     Thursday 27th June 2013

This is the Second Sturge Weber Syndrome Awareness Day.  It is to spread awareness both socially and professionally. This is a very rare neurological syndrome affecting approximately 1-50,000 people.  When looking at a child/young person or adult with Sturge Weber the obvious visual sign is a port wine stain on the face. In some extreme cases there is no visual port wine stain. The birth mark is also present on the brain therefore making it a neurological condition. The Awareness Day is to let people know that Sturge Weber Syndrome is so much more complex than just a birthmark. It affects the person and their family on a daily basis, as well as a lot of time spent in and out of hospital for appointments and regular checkups.

Please wear white on Thursday 27th  June 2013 to show your support and to Raise Awareness for Sturge Weber Syndrome.

This page has been designed for everyone to use, Friends,family,work colleagues,local community groups,schools,nurseries. I'm appealing to you all to pledge that you will help to Raise Awareness.The best way to do this is to organise a fundraising event how ever big or small. Some  sugguestions are as follows:-

Organise a dress down day at school or work, or wear white for a £1. Donation,Sponsored swim,race,walk, Bunggee Jump,Car Boot Sale, Quiz Night, Cyclathon,Bag Pack, Car Treasure Hunt,Buy SWS Wristbands, Coffee Morning, Jumble Sale,Cheese and Wine tasting, A Promise Auction, Race Night, Cake & Bake Sale,Charity Aution, Class Sponsored silence,Race Night,Murder Mystery Night, A Talent Night,Sky Dive,Beetle Drive, 

When you have your idea see if you can find an orginisation to match you £ for £. Maybe you place of work offers this already?

When you have done your event to Raised Awareness for Sturge Weber Syndrome. Please  can you pay your donated monies raised on to this Just Giving Page.

All the Money will go to the chosen Charity " Sturge Weber Uk" direct, who do a fantasic job helping and supporting families with Sturge Weber. Please visit their website for further information on, www.sturgeweber.org.uk.

Thank You for your support.

The facts about Sturge Weber Syndrome are;-

Port wine stain

A Port wine stain, particularly if it is on the face, can affect children psychologically, emotionally and socially.

Developmental problems and learning disability

About 60 per cent of children with SWS have delayed developmental milestones and learning problems. That is, they do not develop and acquire key skills at the same age as children without SWS. This is more likely to happen in children who have both SWS and epilepsy.

However, children vary enormously and so children with SWS can have abilities within the normal range or have more delayed development. It seems that children with abnormal blood vessels on both sides of the brain have more severe learning disabilities than others.

Visual field deficit

Some children with SWS have a visual field deficit. This means that they have trouble seeing objects out of the corner of their eye. In infants, this can be diagnosed by clinical examination, but proper diagnostic tests are more difficult until children are of primary school age and are more cooperative.

Once you know which side is affected, you can make sure that toys, games or work are put within your child’s field of vision. Children with a visual field deficit may seem to use the affected side less than the other, so ways of improving this might be suggested.

Hemiplegia

Children with SWS might have a weakness in the opposite side of the body to the port wine stain due to abnormal blood vessels in the brain. They may also have difficulty using the affected side because they are less aware of it.

The degree of weakness varies from child to child and may be barely noticeable or more obvious. There seem to be three ways weakness can affect children with SWS: in one group, the weakness is noticeable during infancy, in the second the weakness develops with the seizures and in the final group the weakness may develop in association with headaches, and may improve.

Epilepsy

Around 80 per cent of children with SWS have epilepsy (fits or convulsions) if the SWS is on both sides of the face. In most of these children it starts before the age of two and by the time a child is five years old the majority of children who are going to develop epilepsy have done so. The onset of these seizures is often triggered by an illness causing a high temperature.

Various types of seizures might occur, most commonly jerky movements affecting one side of the body, although other types have been reported. If the seizures last for more than 30 minutes or happen very frequently, they may affect a child’s development. Treatment is usually adjusted to reduce the frequency or severity of the seizures.

Headaches

About one third of children with SWS have headaches and migraine-like episodes. It is likely that these are caused by the blood flowing through the extra layer of blood vessels. Headaches seem to be linked to periods of seizures and weakness in many children.

Glaucoma

Another feature of SWS is glaucoma. Glaucoma is raised pressure within the eye, which can lead to blindness if it is not treated. Glaucoma is diagnosed using a test that measures the pressure in the eye by blowing a puff of air.

The majority of children develop glaucoma in infancy, but some do not develop it until later childhood. The specialist eye doctor (ophthalmologist) should examine your child’s eyes to check for glaucoma regularly: every year for the first five years, and then every two years. If your child develops glaucoma, he or she will need more frequent appointments.

Treatment
SWS itself cannot be treated, but there are various options for treating the symptoms. As SWS involves different parts of the body, a multidisciplinary team often provides the best care. Regular reviews with your local paediatrician and child development centre alongside doctors from a specialist hospital will be needed.

The specialists will usually involve dermatologists (skin doctors), neurologists (brain and nervous system doctors) and ophthalmologists (eye doctors).

SWS is a lifelong condition, needing ongoing care and treatment, so a child will need to transfer to adult services when he or she reaches 16 years old or so.

 

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